To address relevant issues related to the communication of genetic test
results from laboratories to clinicians, from clinicians to tested
individuals and within families, as well as to review guidelines for
predictive genetic testing and counselling.

The working group is a multidisciplinary working group with clinical and lab geneticists, neurologists, psychologists, psychiatrists and with a number of leading persons of the European Huntington's Disease Association.

Well motivated members of the European HD Network belonging to the disciplines mentioned and who were not contacted in Dresden are of course welcome to join the working group.

Aims of the working group

The first goal is the elaboration of guidelines for the communication of the number of CAG-repeats
and the implications for the future (health) of the tested person - or
fetus or embryo – as well as for the transmission to the next
generation(s), taking into account the instability of the mutation.
Special attention will be paid to reduced penetrance alleles and
intermediate alleles.

In the communication issues several levels should receive attention:

communication by the molecular geneticist to the neurologist or clinical geneticist

communication
by the neurologist or clinical geneticist to the tested person or the
persons concerned (depending on the type of test).

communication within the family.

Additional objectives related to genetic testing for HD may result from the discussions during the meeting of the working group.To
reach its goal the working group should be multidisciplinary
(neurologists, clinical geneticists, genetic counsellors, molecular
geneticists, psychologists) and involve key representatives from the
European Huntington Association.